The Endometriosis Association

Family Membership

The Endometriosis Association has a special program designed especially for teens with endo and their families! Hard as endometriosis is for an adult woman, adults are likely to have more independence and the life experience and skills to help them cope to some degree. Not only may teens lack these advantages, they have the added pressures of having to sit through classes, keep up with homework, and maintain some sort of social life! It can be pretty frustrating, sometimes. Just read some of the letters we have received at headquarters.

Because we are aware of so many families with endo, and because coping with endo is a family challenge, the EA has established the Family Membership program. Family membership includes a full regular membership with all the benefits as well as the special benefits listed below for teens with endo. We strongly recommend that family members of girls and young women with endo be members and participate in local meetings, contact networks, read the high quality educational materials available from the EA, and keep up with new development. It is nearly impossible for a teen to navigate the complex waters of endo treatment alone. She needs informed guardians and parents to help her with this. For this reason, teen memberships are not provided separate from family memberships.

In addition to all the regular benefits of membership in the EA, our Family Membership Program includes:

TeenSource: The EA’s newsletter just for teens. This quarterly publication contains stories about the struggles and successes of other teens with endo, an “Ask the Expert” column covering health and medical issues important to teens, letters and quotes from other young women with endo around the world, and announcements on people and places interested in what TeenSource readers have to say!

Teen Correspondence Network: A great way for teens to get in touch with other teens who understand what life is like living with endo. It is such a relief to realize that you are not the only one dealing with this frustrating disease. You choose whether to write, email, or call others in the network.

Mentor program: This program connects a teen with endo with a young woman who has already been coping with endo for a few years. The “mentor” can help by answering questions about how to talk with doctors, cope with the side effects of some of the hormonal medical treatments, and simply being a supportive friend! If you have any questions on the Family/Teen Membership program, contact The Endometriosis Association. If you are a teen with endo and would like to share your story, creative work (art, poetry, photography, etc), or anything else for possible inclusion in TeenSource, mail it to The Endometriosis Association headquarters. Call or email with any questions. To join this program, check the “Family Membership” box on the membership form. For more information on teenage endometriosis, check out the article “Am I Going to Die?—Teens and endometriosis,” back issues of TeenSource, and tape #117 in the 15th Anniversary Conference Tapes. See Books, tapes, etc. for more further information.

Letters

Dear Mary Lou,

My daughter, Tamara, is 14 years old and was diagnosed with endo in 1996 when she was 12. She is currently a member of the Association so this application is to renew her membership…She would be especially interested in receiving newsletters relating to teenagers. Vol. 17, No. 4, 1996 was especially of interest to her.

Please let us know if an Association teen newsletter is available. It is going on 2 years since her diagnosis and she feels little to no relief from the various medications tried. We continue our search and try to remain optimistic. Some days that is very hard.

Thank you for the work you do for sufferers of endo. Tamara did her Grade 8 public speaking project on endometriosis this year.

Kathleen, Saskatchewan

P.S. Tamara’s Grandma is sending a donation which she wants to see used for further development of the teen support/education program.

Dear Correspondence Network:

My name is Bryce and I am seventeen years old. I was operated on five weeks ago for stage 3 endometriosis. I am interested in the teen correspondence network.

Thank you for your assistance.

Bryce, Illinois

Dear Endometriosis Association,

…I am 21 years old and am looking for someone my age who has endo and complicating health problems associated with it.

I also want to say thank you all for being there and the research you have done. When I was diagnosed I had never heard of endometriosis. The doctor I saw at that time never explained the seriousness of this disease. Needless to say as time went on and the pain increased I found another doctor who explained it better. Then I found out about the Association. At first I didn’t have the money to join* until last October when things were at their worst. I ordered The Endometriosis Sourcebook and Living with Endometriosis. (Editor's note: The "Living" book is no longer in print.) They both helped me to deal with this disease and to know that I was not alone. My only regret is that I didn’t find a doctor who took me seriously when I was 13 years old and on narcotic pain relievers that just took the edge off. I was 19 before my doctor decided maybe something was seriously wrong…I believe that taking Synarel now is just prolonging what will eventually happen later in my life. I have come to terms that I will eventually have a hysterectomy…I am determined to hold out a little longer since I want children. However, if it comes again to where my life has to stop, that’s where I draw the line.

Again, I am grateful for what you are doing and hopefully we can get the doctors to take seriously a 13-year-old in pain.

Dawn, Pennsylvania

*The Association budgets for gift memberships for those unable to afford dues and a few members donate dues for others. For teens and young women, family members are often happy to pay their dues for them. It’s something they can do to help! So ask your family or friends if you find yourself unable to join or ask about gift memberships.

My daughter Gwen was recently diagnosed with endometriosis after spending the last 3-4 years trying to find a doctor who would take her pain seriously. She is just 19 yrs. old and was told over and over, "it’s just menstrual cramps." We knew that wasn’t correct but had no idea until recently what it was. Unfortunately her condition is now fairly advanced, she is in almost constant pain along with other problems. We have finally found a doctor who understands this disease and takes her seriously.

I hope and pray we can get her condition under control. At 19 yrs. old her life has basically been put on hold, between the pain and complications she basically cannot function normally most days.

She was a full time college student and now she can’t even manage to sit through her classes. As a parent, as her mother, it is unbearable to watch my child in extreme pain, afraid, depressed and frightened. A client of mine who has endometriosis loaned me her copy of The Endometriosis Sourcebook which is how I found you. We (Gwen and I) were so thrilled that there was somewhere to turn for support and information. I can’t tell you what it meant to us to find the EA! My 15 yr. old daughter, Colleen, was just diagnosed with endo. Colleen was showing signs of the same nature when Gwen was the same age. I’m beginning to feel like we’ve entered a nightmare.

If you could also include 50 of your free brochures we will make sure that they are made available at our doctor’s office. If there is any other way that Gwen, Colleen, or myself can help we would be happy to do that. It is obvious this information needs to get out to women urgently. Gwen’s doctor told us that had her condition been correctly diagnosed 3 years ago we would have had a lot more options. Because of her age she wasn’t taken seriously. This began at age 15-16, and even though I was there with her trying to convince the doctors this wasn’t "just menstrual cramps" we still were basically ignored and treated like crazy women. The medical profession’s ignorance of this disease angers me terribly and if we can help change this and get the information to women before they wind up in my daughter’s extreme condition we would be more than happy to help.

Again, thank you for being there, and thank you for all your time and hard work. When we got your information packet it was like a lifeline of hope!

Linda, Michigan

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